The Chronic Illness Diary Of A Young Adult is a blog of a young adolescents life and health issues with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Disorder, Chronic Fatigue Syndrome, Basilar Invagination, Chiari & Chronic Pain. It covers the journey from a teenager to young adult, documenting how life drastically changes when you become chronically ill whilst aiming to help others and learn from fellow chronic illness sufferers in the process.

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Wednesday, 3 July 2013

"What would you do if you were invisible for the day"....

A harmless jokey question asked amongst friends when you are younger now has a completely different meaning for me. "What would you do if you were invisble for the day". I would probably have answered something silly many years ago, but since I have had an invisible illness, in my head I now respond "being invisible is not all its cracked up to be". Not literally invisible, obviously no one is proven to have succeed in that field, well apart from Harry Potter and his cloak. At 19 years old, it shouldn't be the case that this is my initial response. I mean this response in terms of living with an invisible, incurable, disabling chronic illness. My pain is so obvious to myself from the minute I open my eyes in the morning to when I lay down to sleep at night, yet others cant even see it or have any sense of how it feels inside.

Although everyone may not agree with me when I say this, I personally find it difficult looking just as normal as everyone else on the outside yet feeling like my body is slowly breaking down with an illness. Like when a clock just stops ticking. Still looks fine on the wall, but you know yourself it is broken.
A quote said many a time to me by people I know is "You wouldn't be able to tell you are ill, you look very normal". This really does upset me, not because they are being insincere or horrible, they might just be saying it to perk me up as mum always tells me. However, in my mind I will then ponder over the fact how much I despise invisible illnesses. Along comes the process of feeling the need to defend ourselves, our pain and our disabilities when hearing these comments. I will sit and make up scenarios in my head over whether people even believe I am ill, especially for my age. The truth is, I have been chronically ill since the age of 13. Do these commenters just think I'm lazy, attention seeking, a moaner, a hypochondriac. This is something I even question with some distant relatives who rarely see me and just hear how I am through a phone conversation. What are their thoughts on this so called illness nobody had even heard of until myself or a close family member dropped it into conversation.

I don't want people to feel sorry for me at all, that would be the last thing I want, I just want to educate people on chronic illness and understand that we always feel like we are falling apart. The smile, the make up, it's all a facade. We appear to be normal in a body that just doesn't want to be. The only time people may remember that I have an illness is when I mention I have a hospital appointment or drop into conversation the use of my wheelchair. It's as if because we don't use physical aid twenty four seven in front of other people within our home or because there is no obvious and physical issue that we are not classed as chronically ill or even more accurate, disabled simply because we may look slightly healthy on the exterior.

I feel like no matter how many times you explain you have a chronic illness people will never understand, because they just see the 'act' that you present to the world. The act that takes you hours, with your makeup and hair done to make you feel a little more normal and average after having a rough day. If only they knew that when they see you its the first time you have been out in weeks. The first time you have probably felt fresh air on your face because you have been bed bound since your flare up started weeks ago. The first time to have managed to wash your hair with help in a long time. The first time you made it downstairs before midday. The first time you have ditched the pyjamas for regular clothes. Maybe they would have a different view if they were a fly on the wall in your home or had more of an insight. Or maybe that is our natural instinct, to try and push aside how we physically feel for the benefit of others because some illnesses are so unknown, prejudged and rare amongst the public knowledge. This is why I am desperate for there to be more awareness and knowledge of my invisible illnesses, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, ME/CFS and Gastroparesis.

I think some of my anger and sadness within the aspect of invisible illness lies within the fact that some of our individual illnesses are so unknown. Why would people who are not in the medical profession even begin to understand something so complex when the professionals don't even have much of a knowledge themselves. At some appointments I've been to locally, I've had to sit and explain to a professional just what Ehlers Danlos is and what my symptoms include. They are shocked to see how it truly effects my daily life, they are shocked to hear I am housebound, they are shocked at my use of a wheelchair for my age and they are at a dead end with helping me and my condition. Many have never even heard of it, which is a worry for all those people who are undiagnosed and living with a question mark over their heads. Desperately seeking the right doctor whilst staying in a system of being diagnosed with very common illnesses or being told that it is all in their head.

A medical professional once asked me the question, 'do you want to be seen as a normal teen or seen as somebody with an illness'. My reply was, yes to an extent I do want to be a normal teen, but my reality is I am not because of my medical condition, it is something that at this moment in time dictates and controls my life. Of course I want to live my life but my pain and chronic illness is what is holding that aspect up.

Maybe my feelings towards peoples perception of 'invisible illness' are issues with the way I feel right now and maybe they will change as I get older and continue to deal with this. I always constantly worry how I am viewed by others, its a trait I don't like in myself. Some may think I am contradicting myself with this post. But I feel like there will be at least one person who might feel the same.